Category: Sensory Issues

…is not something I did this weekend. In fact, I need a weekend after this weekend, but I’m not going to get one. At least I do have this Friday off (for Veterans Day), so it’ll be a short work week, but I expect it to feel long instead.

I visited family this weekend, including going to a wedding reception for my cousin. I hadn’t gone to any family functions in a while, so it was good to see people (although everyone’s kids had grown roughly six feet taller, so I didn’t recognize any of them) but it was also very loud, the food arrived late, and everyone was very huggy. Focusing on conversations against a background of loud music and lots of other conversations took a lot of energy.

Overall, though, it was a really good visit — I got to spend time with my parents and sister, and the dogs were really well behaved. I even got some study time in, so I’m not too far behind my usual weekly schedule. I’m just wiped out now, after the three-hour drive home in a rainy drizzle.

Last week I was actually very good about being aware of my energy and anxiety levels, and postponed starting on a new work project that could have started on Thursday, because I had a lot of things to get done before heading out for the weekend. Of course, that project was postponed until tomorrow, so I can’t really take the same steps this time, but at least I did get a lot of things wrapped up before the weekend so they won’t be hanging over my head this week. Just the usual load of work, school, and personal projects — but I’ve gotten used to managing that, and I can find little ways to recharge as I go.

And that starts right now, with a relaxing rest-of-my-Sunday. Hope you’re having a good one! 🙂

I have never liked to cook. I did it a little back when I lived alone, and a little more when I was with my first husband; he didn’t really like to cook either, so we agreed to split the job. But my current husband loves to cook, and, well, I like to let him. 🙂

The only problem is, he works in the evenings three days a week, which means I need to fend for myself for dinner. Sometimes he makes me something in advance, other times I get take-out, and yet other times I eat leftovers or some frozen dinner type of thing. But none of that is ideal, and one consequence (besides me not eating as healthily as I wanted) is a feeling of dependency on my husband; when he isn’t home, I’m not sure what to do, which leads to increased stress. It took me a little while to pinpoint this, but when I did I knew something needed to change.

But cooking? I have never really enjoyed cooking.

For one thing, I like to have clear instructions when I am first learning something. Once I’m comfortable, I can start to wing it, but I don’t like to do that right away. The trouble is, when trying to follow a detailed recipe, I’d inevitably run into ingredients (or sometimes tools) that I didn’t have, so I’d have to adapt it. That involves evaluating what I do have, and making decisions. This quickly becomes overwhelming. Of course, I could always choose a recipe ahead of time and make sure I had everything I needed, but somehow that never seemed to happen. (Good old executive functioning…)

So I decided that if I was going to start cooking for myself on nights I was alone, what I needed was a) step-by-step instructions, and b) the knowledge that I had all the ingredients required. Enter meal subscription boxes.

There are a lot of those out there now; you may have heard of Blue Apron or Hello Fresh, but there are several others. After a bit of research I ended up choosing Sun Basket, because I liked their ethic of using organic and ethically/sustainably sourced ingredients. I also liked that I could choose which meals I received, so I wouldn’t be surprised by a main ingredient that I absolutely abhorred. I don’t have too many food issues, personally, but there are some things — eggplant, for example — whose texture I just can’t take.

So I just got my first box this week, and cooked my first meal last night. This…was a lot of work. With a few small exceptions, what they send you are raw ingredients, so that you are cooking entirely from scratch. That’s one of the things I liked about this plan, but it is quite a lot more than I am used to doing. Also, while the recipes do include timing instructions (while the X is baking, prepare the Y, etc.) at least this first time, things didn’t work out exactly to plan. So it was a bit of a scramble at times.

I also have some sensory issues around getting my hands sticky, or slimy, or in contact with raw meat. So I was frequently stopping to scrub my hands free of oil, lemon juice, and/or bits of food as I went. (That probably didn’t help with the timing bit.) On the other hand, I did enjoy the sensory experience of smelling everything as I chopped and cooked it, as well as the visual display of all the fresh ingredients on the cutting board.

And in the end…this was by far the best meal I have ever cooked to date. The mix of flavors was very nice, and there was plenty of food. Beyond that, I had a fantastic sense of accomplishment from making this meal, as well as a pleasant sort of fatigue that left me very relaxed after I ate it. I’m looking forward to trying a different dish tonight, and tomorrow my husband and I are going to make one together. It’s only been one night, but so far this seems like a great solution to my original problem of what to do for dinner on my own.

Sometimes overload — whether sensory overload, social overload, or general emotional overload — feels like exhaustion. It feels like muddy thoughts, dull senses, and an overwhelming desire to escape. That’s often what it feels like, at least for me. But sometimes what overload feels like…is anger.

Let me back up. For most of my life, I didn’t know I was autistic, so I didn’t realize that I was extra sensitive to many sensory inputs. Sure, I could tell when sensory issues were bothering me, but in general I assumed that if they were bothering me, they would be bothering anyone. The situation alone was the cause, not the situation plus my (autistic) sensitivities.

What this means is that I assumed that other people would know they were creating an offensive sensory environment, and they just didn’t care. I assumed my assessment was an objective truth: it simply was too loud. Too bright. Too smelly. Too chaotic. Too upsetting. All the other people involved? They should have known this was too much.

And I would get so angry that they didn’t. Angry that I had to say something, to call attention to myself and the difficulty I was having. Angry that they didn’t just know. Because it should have been obvious…right?

But my assessment is always my assessment: the combination of me and the specific situation. Yes, some things would be too loud/bright/scratchy/crowded for almost anyone, and yes, sometimes people are inconsiderate. But often I would end up getting angry about something no one else even realized was a problem. It might be the annoying, distracting buzzing sound that no one was fixing becauseno one else heard it. Or the loud background music that kept me from understanding what someone was saying…because of my own auditory processing issues, not the music’s volume.

So I try to catch myself now when I start feeling this way, and ask myself whether the problem really is as self-evident as it feels to me, or if it’s partly my own idiosyncratic (and autistic) response to things. Of course, if it is the latter, I can still ask for the situation to be changed — and now I can ask in a way that acknowledges that other people may not have realized the problem, rather than angrily assuming they didn’t care.

And none of this is to imply any self-blame on my part; there’s nothing wrong with having sensory sensitivities and needing to take steps to be more comfortable. But being aware of those sensitivities, and how they contribute to my perception of a situation, can help me not only head off feelings of overload, but also recognize and own that perception before overload flashes into anger.

As I’ve been learning more and more about autism since my diagnosis, I’ve come to recognize how different autistic traits manifest for me. (For a recent example, see my last post about black-and-white thinking.) It’s been an interesting process of translating descriptions of autistic traits and/or diagnostic criteria (which can be fairly abstract) into real-life examples — and it’s a process that would not be possible without the many first-person accounts by other autistic people in books, blogs, articles, and tweets. You’ve all helped me understand what a particular trait might “look like” in different autistic people, and so what it might look like in me.

What I’ve been noticing, though, is that while I can read about autistic tendencies and think, “Yes, I experience that,” it’s often hard to notice in the moment that I am experiencing them. Now, I think I’m a pretty observant, self-aware person — but things like sensory overload, or brain fog after stress, can still be affecting me without my conscious awareness. In a way, it’s just part of the nature of the beast — exhaustion after social activities makes any kind of thought more difficult, for example. Sensory overload from external sources makes it hard to notice my internal state. Eventually I notice that I’m feeling fried, but only after it reaches a tipping point. Up until then, I don’t feel myself getting fried.

And then there’s delayed processing. Delayed processing can give me an emotional reaction to something that happened long enough ago that it’s not part of my conscious memory anymore. That makes it hard to realize just why I’m getting emotional. Add to that a degree of alexithymia, so that I don’t necessarily even know what I’m feeling, and things can get very confusing, indeed. So I end up with delayed processing, and also delayed recognition that I am even still processing something.

No wonder meltdowns and shutdowns can seem to come out of nowhere!

So I try to pay attention to my internal state, and also build up greater recognition of the types of situations that are likely to trigger these difficulties. But I’m also trying to learn how some of those intermediate stages feel, like the point where I’m getting socially fried but am not quite there yet. I’m hoping that will help me head off those kinds of problems earlier, and just generally pace myself better when I’m out in the world.

If you’re like me, you probably know how it feels to get overwhelmed when too many people are talking at once. Maybe it’s a relaxed group conversation, or an animated classroom discussion. Maybe you’re trying to have a conversation in a crowded restaurant. But whether or not the majority of voices are directed at you, just the sheer volume — both the volume of noise and the volume of words/thoughts/ideas — begins to overwhelm any single voice, any single unit of information being conveyed.

Sometimes the internet feels like that to me. Especially when it comes to social media, and particularly when it comes to Twitter: whether people are directing their words toward me or not, there are just too many voices for me to process.

And when that happens, I lose my own voice.

I lose my voice because I have to pull back. Otherwise I get lost in the forest of other people’s words, and that makes me lose track of what’s important in my life. Sometimes I really want to reach out, but I can’t figure out what to say. I don’t always want extensive interaction, or help solving a problem — I just want some connection. But then I pause, because I don’t want all the voices focused on me, even though I dread being ignored as well.

So all of this is to say that I have been pulled back lately. Right now I am starting to reconnect with Twitter after nearly a week off, but I am still not feeling ready to share very much. I am woefully behind on reading all of the wonderful blogs I follow, too, and the thought of trying to catch up is daunting. I will be visiting family this weekend, which has its own trials, and we’ll see how “peopled out” I feel after that.

I do want to say, though, that generally things have been going well. 🙂 In fact, that’s probably part of why I’ve needed to pull back from online interaction — there has been a lot going on, and my focus has been pulled into new projects and areas of study. But I’d like to find a balance that allows me to maintain the connections I’ve made in the online world while also not getting overwhelmed by the flood of voices.

Yesterday, I attended the AANE (Asperger/Autism Network) 2017 Spring Conference, which was titled Hiding in Plain Sight: Shining Light on Women with Asperger/Autism Profiles. It seemed primarily geared toward professionals working with people on the autism spectrum, but two of the keynote speakers were autistic women, and there were quite a few of us in the audience as well.

VoxVisual wrote up an excellent recap at her blog already, which is great, because I am still too wiped out to be that organized. <grin> And honestly, I don’t know that I would have too much to add when it comes to describing the speakers, the venue, and the overall experience. So go read her summary, if you want to get an idea of what the conference was about.

(And yay, we got to meet! 🙂 That was really cool, even if we had to postpone dinner plans due to exhaustion.)

But while I don’t want to duplicate her efforts in recapping the conference, I do want to write about my subjective experience of planning for, getting to, and physically attending it. First of all, I was selected to read an essay I had submitted, as one of six personal accounts of being a woman on the autism spectrum. (You can read that essay here, if you like.) So even before conference day, I was interacting with the organizers to polish up my essay and make sure I was ready to present it. The volunteers I emailed and talked with were very good about setting expectations and answering all of my questions — clearly they (as women on the spectrum themselves) were aware of some of the anxieties that might arise.

The week before the conference day, I made sure to print out all of the information I would need — directions, schedule, a clean copy of my essay to read — and make a checklist of other things I would need to bring. I wanted to bring plenty of water, for example, and I would be bringing my own lunch. Lunch was included in the conference registration, but having recently cut wheat out of my diet, I was concerned about the gluten content of the sandwiches offered. Besides, I figured the day would be stressful enough without subjecting my body to unfamiliar food (which doesn’t always agree with me).

Google Maps told me the drive would be about two hours each way, but I would be driving in toward Boston (and back out again) around rush hour, so I gave myself extra time. It ended up taking me about 2 1/2 hours each direction; I left home around 6 am and got to the conference center (after parking and making my way through several wings of the hospital building) a little after 8:30. The first speaker didn’t start until 9, so that was perfect.

Check-in was easy, but walking into a large crowd of people outside the venue was disorienting. And it wasn’t just the people: there were tables with food and coffee, other tables with pamphlets and fliers for the organizations who put together the conference, and too many other things to look at. So I went in to find my seat; at least I knew I was supposed to sit down in the front, and when I got there someone recognized my name tag and directed me to a seat.

Since I was early, though, I stood back up to see if I could find Vox. We had told each other what we would be wearing, and shown each other pictures, so this turned out to be easy. 🙂 I felt like we immediately clicked, and spent the rest of the time before 9 chatting about several different things. (As would come up later at lunch, with some other women, socializing with other Aspies/autistics can be soooo much easier!)

I went back to my seat just before 9, where I met a couple of the organizers and some of the other speakers. I felt a little exposed sitting in the front row, right in front of the podium where most of the speakers would be standing (and therefore where the camera for the live-stream would be pointed). This didn’t become evident until the second speaker, though, because the first was himself being live-streamed from the UK. Being in the front row also meant I was looking up most of the time in order to see the slides, or up at a different angle to look at the speakers’ faces. The venue was fairly bright, too, and sometimes the sound was too loud, while other times it was too quiet.

By the noon lunch break, I had finished all of my water (I was very warm for most of the day, as well) and was developing a low-level tension headache. My neck and shoulders were tight, something that had crept up on me without my really noticing it. I think it was all of the ambient noise from the crowd — people turning pages as they followed along with the speakers in their printed slide packets, occasional whispered conversations, people moving around. These are the same sorts of things that had stressed me out while working in an open-plan office, things I didn’t even consciously notice until I learned I was autistic and tried wearing noise-canceling headphones. I guess I still don’t notice them until they’ve built up into tension and pain.

(As an aside, it was interesting to read Vox’s observations of the reactions from the audience, and what things seemed to surprise or interest — or upset — them. Since I was in the front row, I didn’t get a perspective on that.)

Lunch conversation was great, and it was good to get some food. (I also snagged some more water.) It probably wasn’t the best idea when I suggested we seek out a table in the larger hospital cafeteria to eat — it was busy, and sometimes hard to hear each other over the dull roar — but it wasn’t clear where else we could have settled down to eat. The rooms near the conference venue were already pretty full by the time we all got our food.

Settling back down for the afternoon, I was already pretty fried. As I mentioned earlier, I was really warm during most of the day. It was a very cold day, but I thought I had dressed in a way that struck a balance between keeping warm outside and not being too bundled up inside. Apparently I should have worn something a little lighter. It also didn’t help that I was scheduled to present my essay in the mid-afternoon, so I had most of the day to be nervous in anticipation of that. My nerves weren’t too bad in the morning, but during Liane Holliday Willey’s talk after lunch, it was all I could think about.

I also felt like my voice was going to be hoarse from all the talking over lunch and during breaks — but I didn’t want to drink too much water before I had to talk, because I hate the feeling of having to pee while trying to focus on something else. So I decided it was probably for the best for my mouth to be a little dry; it would probably help my voice sound a little clearer than if I had too much moisture.

(Seriously, these are the logistical practicalities that run through my head all the time. All. The. Time.)

In the end, I was very happy with the way my presentation went. My knees were shaking, but my voice wasn’t, and I had a podium on which to steady my hands. After I was done, I was very happy to be sitting in the front row, because I only had a few steps to walk before I was back at my seat and out of the public eye. And I definitely felt my shoulders relax — though not completely — when it was over.

Maybe because of that feeling of finally-now-I-can-relax, I kind of floated through the last talk of the day. It also was a bit less relevant for me, as it related more to parenthood, but I did enjoy some aspects of it. Mostly I was just getting hit by the cumulative weight of all of the sensory input of the venue, the social interactions during lunch and breaks, and the cognitive processing of listening to all of the talks, as well as all of the logistical planning required to navigate through the day. I managed to have a few more — really excellent, I have to say — interactions after the event was over, but yeah, I was very much done.

My brain was foggy with all of that by the time I left, and I still had a 2 1/2 hour drive home — over half of it in the dark. At least in this direction I was leaving the city traffic behind, and most of the night driving was on familiar terrain. I had listened to an audiobook on the way in, but by evening I was talked out and needed music. So I put all of my Dar Williams albums on shuffle and sang along with her for the whole way home. 🙂

Overall, this was a great day, and I enjoyed the conference immensely. While I think there may have been some ways in which the venue might have been improved as far as sensory issues — Vox mentioned several in her post — I also feel like a lot of the things that eventually wore me out were just…going to wear me out. I also think I might have been better off sitting somewhere in the back for the morning, and only down in front during the talk right before my presentation. I would have felt a bit less “on display” and also would have been farther away from the epicenter of all the light and sound.

I feel like there is so much more to say — for example, I really, really enjoyed listening to the keynote speakers and the other first-person accounts, and think they provided a lot of good information and perspective, especially to those in the audience who weren’t on the spectrum. But I wanted to write this up as an example of how…involved it can be to attend something like this as an autistic person. And now I’m going to enjoy a nice quiet weekend to unwind, because I can. 🙂